u/Virtual-Ladder-5548

For years I've had neurological symptoms that seem to be caused by neck position -- headaches, dizziness, trouble breathing, confusion, chest pain, heart palpitations, and a shaky/restless feeling. I also have pain that's bad enough to make me semi-conscious/almost faint for several hours a day. It's severely limiting my ability to drive, work, do chores, sleep, and do almost all hobbies/entertainment. I went to the ER a few months ago because the palpitations and shortness of breath were so severe.

I have EDS and I suspect a nerve and/or blood vessel is getting pinched due to hypermobility. My neurologist has done some imaging and "ruled out" CCI, AAI, and Chiari, but the symptoms are still getting worse, and I know there's other imaging that hasn't been done, like a flexion/extension MRI.

I decided to get a second opinion from a doctor that specializes in hypermobility, but she's been unwilling to give me clear advice on what to do next. She's emphasizing physical therapy, even though these symptoms started while I was doing PT. (I don't know if they started *because of* PT, but I think it's possible. And yes, that physical therapist was experienced with EDS and was hypermobile herself.) The doctor ordered a flexion/extension MRI, but we hardly discussed my symptoms at all. When I looked at the notes after the appointment, they said, "Patient was encouraged to abort imaging study should she experience progressive shortness of breath, chest pain, dizziness, hearing/ vision changes, paresthesias, and/or AMS." The doctor didn't tell me this during the appointment, and if she had, I would have told her those are the symptoms I'm experiencing every day.

After many messages and a phone call to try to clarify, it seems like the doctor is unwilling to make a clear recommendation on whether she thinks it's safe for me to do the MRI. I told her I was fairly sure I would faint if I had to hold my neck in those positions for 3 minutes, but that I'm willing to pass out if it'll give us useful information (can't be worse than a tilt table test, right?). She told me not to do it if I thought I would faint.

But she's also saying she's not comfortable recommending lots of other treatments unless I do the MRI. Obviously, I understand no doctor would recommend surgery without doing imaging first, and I hope surgery won't be necessary. But she's not even willing to let me get fitted for a hard cervical collar (I've tried a soft collar and it made the symptoms worse). She doesn't recommend regenerative treatments until after I've completed PT. The physical therapist she recommended that has experience with cervical instability isn't available until the fall. I'm currently doing OMM/OMT but even that doctor says he doesn't think it'll be enough on its own.

I know the severe end of cervical instability can be even more severe than this (bedbound, unable to walk without stumbling, can't speak, etc.), and I'm grateful I'm not at that point, but I'm really struggling to live independently, and I'm frustrated that my doctor doesn't seem to have more urgency to find a solution. I keep thinking I can't be the first person whose symptoms are severe enough to make the imaging inadvisable, but surely there has to be some treatment option other than physical therapy in that case.

I'm wondering, what if I were to do the imaging and it shows that I need surgery or something more intense than PT? If that's the case, I don't want to not do it and never know that. And, would "failing" the imaging (fainting or having to stop) prove anything in itself?

What would you do (or have done) in this situation? Here are the options I'm considering:

- Physical therapy (even though it's made me worse in the past), possibly with someone who's less experienced with cervical instability but available sooner

- Do the MRI (even though it costs $800 and I think it's very likely I won't be able to hold the positions long enough to get useful images, not to mention the risks the doctor warned me about)

- See a different doctor and see what they recommend about the imaging, cervical collar, etc.

- My current doctor also suggested, as an alternative, a dynamic CT scan turning my head in different positions that could show AAI. But I'm sure it's also going to be expensive and still isn't going to give her the information she really needs (she keeps saying the flexion/extension MRI is the gold standard)

- Do you agree that it's unhelpful to do regenerative treatments (PRP/prolotherapy) before PT?

I'd also love to hear from anyone who's had a upright flexion/extension MRI -- how long did you have to hold the positions? The practice that does the MRIs told me 3 minutes for each position, but my doctor keeps saying it's only "seconds."

I'm listening to an audiobook with a British narrator and she just pronounced it "mee-grain." Is that really how you all pronounce it?

I feel like for the last year (or even longer), I've been going from crisis to crisis. Most of them are related somewhat to my chronic illnesses (or being poor, which is also a result of being too sick to work full time).

Last summer I broke up with my partner of many years. The breakup, move, and the process of selling our house caused post-exertional malaise that I still haven't fully recovered from, 6 months later. I knew that was a possibility but I was hoping for the best, and I was even hoping that having the stress of our relationship out of my life would improve my health. But that's not what happened. Based on my function before we broke up, I could handle living alone, but now, I barely can. Driving, chores, and work have become almost impossible.

It makes me wonder if I should have stayed with my partner. We fought a lot (often about my health), but I do think he genuinely loved me and wanted to make me happy. But I respect him enough to not want to pretend to love him just to have someone to share living expenses and chores with.

I feel so alone now. My parents have helped me financially, which I'm grateful for, but emotionally it's bad. My mom is very dismissive about my disabilities, or else makes it all about herself, and we argue a lot. As of last summer, I thought I had a decent support network of friends, but a lot of those friendships seem to have diminished. (And maybe it's also that I want more time with friends now -- when I had a partner, he took up most of my energy for interacting with people.) It's hard to make new friends because I can't really do any hobbies right now (other than listening to music/podcasts/audiobooks) and I don't have much to talk about with people without sounding depressing.

My health is getting worse, which isn't a complete surprise, but still annoying. I'm having serious neurological issues that interfere with me driving, working, doing chores, and even doing the medical administrative tasks I need to do to get better (scheduling appointments, researching treatments, etc.) I'm also recently starting to have trouble focusing my eyes so that it's hard to read. All of this makes me worry that I'm losing my ability to live independently. My doctors don't seem to get the urgency I have about trying to resolve all this (or maybe they just don't have a good solution to offer.)

My living situation is also a problem. I can't regulate body temperature (POTS and ME/CFS), so I need air conditioning, but the window units in my apartment are so fucking loud they're causing me PEM. I bought quieter ones at my own expense, but I'm not sure they're compatible with the windows. If I can't find a way to install them, I'm seriously considering moving. But how am I going to tour and find a better apartment and pack and unpack all my shit when I don't even have the energy and ability to keep up with my normal everyday stuff? And what if that apartment has its own issues that affect my health, like mold or noise?

I'm so tired of all this. I feel like I keep going from the frying pan into the fire. I keep wondering if I'm doing something wrong, like making bad decisions or having unreasonable expectations, or if this is just a normal result of disability and poverty.

I mostly just wanted to vent, but if anyone has any advice that's cool too.

There are so many administrative tasks that come with being chronically ill. Scheduling appointments, filling out forms, researching doctors and treatments, making notes before appointments (because I have too much brain fog to remember everything without notes), dealing with insurance, getting referrals, reapplying for food stamps every 6 months, applying for programs like disabled transit services, researching power chairs, eventually researching and applying for Social Security.

Lately, I just don't have enough spoons to do all this. I've tried to outsource a lot of other tasks in my life, like my work (I own a business, so I've outsourced most of that work and now I'm basically a manager role). But it seems harder to outsource the chronic illness/administrative stuff because it's hard for someone else to know all the details of my symptoms, what criteria are important to me in a doctor or a treatment, and all the personal information you have to put on forms (like ID numbers).

I'm lucky enough to have great friends who keep offering to help me however they can, but I just can't think of a way to outsource most of these tasks. Has anyone else found a way to make it easier to outsource medical administrative tasks?